The team at Epilepsy Lifestyle are celebrating the announcement of their first ever main sponsor thanks to The Wellesley Charitable Foundation.
Epilepsy Lifestyle was founded in March 2014 by Eastbourne mum Marie Baker.
Marie has a 10-year-old daughter with Dravet Syndrome, a life-limiting neurological condition that causes severe epilepsy.
Daughter Aimee has very uncontrolled seizures, sometimes lasting hours. It was Aimee’s condition and the lack of practical support that prompted Marie to set up Epilepsy Lifestyle.
Epilepsy Lifestyle funds night-time monitoring equipment for local children with an epilepsy diagnosis.
Sadly the monitors are not available through the NHS and can cost up to £800.
However, Epilepsy Lifestyle has been able to run the ‘Night Time Monitoring Scheme’ without a waiting list since it was founded and now, thanks to The Wellesley Charitable Foundation, families in Sussex will continue to receive their
monitors without, what can often be, an agonising wait.
Marie met with the trustees of the foundation to discuss the charity and the need for the ‘Night Time Monitoring Scheme’ and was delighted when they suggested becoming a main sponsor. The Wellesley Charitable Foundation, which aims to
raise money for local charities in Sussex helping ill or disadvantaged children, will be providing 10 Emfit Epilepsy Monitors and five Pulse Oximeter machine packages for children applying to Epilepsy Lifestyle.
Lynn Fuller, who is the administrator for the foundation, said, “The trustees are very pleased to support such a worthwhile organisation, providing essential equipment and guidance to local families.We intend, together with our main company Wellesley Wealth Advisory, to work together to benefit as many children and their families as possible.”
Marie said, “We are absolutely delighted to have The Wellesley Charitable Foundation as our main sponsor. Many people do not realise that it is possible to pass away from having seizures. The monitors we provide go some way towards alleviating the stress and worry that parents have overnight and really do have the potential to save lives. We are incredibly excited to have The Wellesley Charitable Foundation on board, helping us to provide these monitors waiting-list-free.”
For more information on Epilepsy Lifestyle or if you know someone who could benefit from the ‘Night Time Monitoring Scheme’ then visit the website at www.epilepsylifestyle.org.uk
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